February 7, 2011: Last day in the tundra...

Heaveno!

Man, we don't leave till tomorrow and we already miss this place.  Minnesota is so awesome.  We feel so on-purpose here.  The types of meetings and conversations we have been involved in with MMF, CCRF, PUCK, Dr. Wagner, and Dr. Tolar have been nothing short of SPECTACULAR.  We are so impressed with everything they are doing here.  We feel so at home.  We learned more about Drs. Wagner and Tolar this trip by getting to spend 2+ hours with each over meals.  We never got that much uninterrupted time with either as patients, because you usually don't spend that much time with your doctor.  Plus, when Bella was a patient, the conversation was very 'in the trenches' as it pertained 99% just to her condition at the moment.  Now, we are working strategically as opposed to tactically with the two and in this context, we have really gotten a deeper glimpse into each man.

They are geniuses.

One of the things we want to hear from you all is what questions and / or concerns do you have about the EB program here at the U?  We want to get your questions answered and your concerns handled.  We feel like there has been some amount of message out there, but tell us what still is a mystery / doesn't quite make sense / etc.  If you have a question, chances are someone else does as well.  The questions aren't to be directed to us as parents.  What questions do you have about the program; that is specifically what we are looking for right now.

Thank you.  Please.  Comment.  Wanna support us?  Here's how.  Comment.  The more feedback we get, the more comprehensive we will make the new video we are creating that will act as a main and MAJOR fundraising campaign.  The more questions you have, the more we can answer in the video.

On a personal note, it was soooooooooooo good to see all our friends up here.  I feel like we got to spend some time with every single couple we connected with over the summer who live here.  THAT is no easy task, as any of you will attest to when you travel home for the holidays for example.  The only thing we didn't accomplish was a meal at PUNCH pizza.  I am sad about this.  However, I'd rather we had the time we had with PEOPLE over PIZZA.  I know.  I said it.  I chose people over pizza.  Pretty big of me, huh?  Seriously though, thank you to all our Minnesota friends for accommodating our schedule and making it all work so we could all see you.  We miss you dearly already.  Somebody get married or something in, say, June or something.  Wait, now that Jeremy and Renee are hitched, you're ALL married!  Rats.  Well, we'll figure something out!

We had a wonderful dinner at Logan and Erin's tonight.  Erin watched Ali for us today while we had our meetings at the University. Then, while we were standing at the cross walk to get our car, I look to my right and who is standing there but Logan, on his way to the bus stop to take the bus home from work!  That is the second time I have run into Logan on a street corner near campus!  It was good timing for him as it was pretty chilly today, and he has a bit of a walk from his bus stop to his home, so we hijacked him since we were driving to his house anyway!  Our other friends, Mark and Lisa and their two girls, came over and we had a big ol' reunion.  It felt so good to be all back together again.  The kids had the best time, and Ali lost her first tooth right in the middle of it all!  Sure enough, her two front bottom adult teeth are coming in, and her tooth that has been loose for a few weeks now popped out!  What's the going rate at the tooth fairy?

God night.